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sueinoregon
@sueinoregon

Posts: 3
Joined: Sep 10, 2018

New Diagnosis of MAC/MAI & I'm scared

Posted by @sueinoregon, Mon, Sep 10 2:58am

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

REPLY

@sueinoregon First let me say “welcome to this site.” Like you I was in an emotional place about this diagnosis, especially since I, like you, have other things going on as well. This site will give you so much good informative and support. I have been so grateful for that and for the friendships I have made through this empathetic and knowledgeable forum. Because of that I am in a stronger psychological place than I was before finding this site. Each of us have our own personal journey with MAC. Attitude is everything Sue. We are all here for you, and if you go back and read previous posts you will find lots of answers. Our previous and present mentor and many members have been extremely helpful in providing good and helpful information and support about this disease. Welcome! (Irene5 from Connecticut)

@sueinoregon Keep plugging Sue. I am also from Oregon, (Lincoln County) Sounds to me like you have enough diagnoses to push for a dX of some disorder that would trigger all these things, probably an autoimmune something or other. There are some things you can be pretty sure of. It is Systemic (whole body), Primary (not triggered by something else like radon, etc.), At your age, 61, you are just getting into the years when these diseases are typically catching up with you. Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. Now, I am not sure but I could easily guess some form of Amyloidosis Light Chain such as Crohn's, Lupus, AL, Gelsolin (mine). (https://bit.Ly/1w7j4j8 under "Amyloid". There are a couple thousand in this category. Mayo-Rochester (Dr. Martha Grogan) or Stanford can help you most. Martha Grogan has done some wonderful videos on diagnosis of Amyloidosis, and they are free. Watch several of them, and you will surely get some great leads. Your doc will need to start with the SERUM FreeLightChain(c)Bindings and have ARUP in Salt Lake City analyze it. They are probably the best in the West. If your reading is >1.5 milligrams protein per deciliter of serum, you are seriously on the right track. if less than .5 mG/dL, protein is not the issue.

@sueinoregon
Hello Sue and wellcome to this board my name is Shari.
I am so sorry for the health trials you have been going through. I know how really hard it is to deal with receiving news like that.
I believe it helps a lot to talk with others that are going through the same things or have been through some of the same trials. Also on this board you will learn so much about this disease, treatments and about how we can also be overcomers.
There are others on here on the board with RA I am one of them. I also had to go on SS disability for the RA a number of years ago. I was also on a biological immune suppressant drug 7 years ago but that wasn't when I was diagnosed with MAC but was diagnosed with Pseudomonas which had gone on for months before I got in to see a pulminologist.
The pulmonologist then took me off the immunological suppressing drug for RA immediately. I have been doing very well for 7 years with the RA while being on two different drugs to treat it that don't suppress my immune system. One is minocycline three times a week the other is plaquenil.
I also have been testing negative for Mycobacterium Abcessus for a year and a half now. I had tested positive for one year prior and did not do the antibiotics but a number of alternative treatments.
There is hope you can get through this. You need to get the best Doctors working for you. Some others here didn't take antibiotics some rotate one antibiotic for one week every month and some have or are taking the antibiotics.
Also there are some treatments coming on the scene that are easier like nebulized antibiotics or inhaled nitric oxide to name a couple.
Hang in there we are here for you!
Shari

@sueinoregon…hi there…when I first got my diagnosis, I was scared, and still am sometimes…what helps is getting as much information from this support group that u can to empower yourself to understand your treatment options…I felt sad at times, and still do, at times…it’s part of a grieving process, when u lose your health to chronic disease…it’s normal…everyone will have it to various degrees, depending on what u r battling, length of time, and your support systems…having s good therapist will certainly help with the journey, good friends, exercise, meditation etc….you are dealing with slot…if it wasn’t for this support group, and especially Terry, our volunteer mentor, I don’t think I would be doing as well emotionally…. Day at a time❤️

Hi sueinoregon, I understand what you’re saying. I am 63, and was diagnosed 4 years ago. It is hard to deal with so much that’s going on but time goes by and it gets a little better as you go. I too have Sjogren’s and RA and MAC. Is there anyway that you can find a Mayo Clinic close to you? I can tell you of the great experience I had with doc at Mayo. I was for Four years struggling with all this same stuff until I went Jacksonville Mayo Clinic. The doctors know exactly how to treat this disease. When I first got diagnosed I took the big 3 also, after six months I got really sick and had to stop, I did not used any meds until now which I’ll be starting an inhaled antibiotics in my nebulizer and chloride sodium. I feel so good about this new treatment that it makes me excited and I feel like I’ll be able to get to a place where I can live my life again. So hang in there, there’s always help and you are in this wonderful group that filled with great people who’s always there for you. I would have never found Mayo on my own. I hope and pray that you will have good health.

@tinaesims

I was just diagnosed but it is not severe so we are just doing the Aerobika for 6 months and then another scat scan. I’ve had-bronchiectasis for 10 years. I will try anything not to be on the medications. The internet is scaring me. I read about a form of vitamin D to try. What is it and what dosage?

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tinaesims I have had bronchiectasis for many years (I'm sure) but was finally diagnosed at Mayo's three years ago. I had just a bit of MAC but the pulmonologist there told me most everyone has some. He went on to say he might have too — he doesn't know — because he's had no reason to find out. He says unless it increases, we won't worry about it. Just thought I would share what little I know about slight cases of MAC. Perhaps he's wrong — but that's what I was told.

@auntnanny

tinaesims I have had bronchiectasis for many years (I'm sure) but was finally diagnosed at Mayo's three years ago. I had just a bit of MAC but the pulmonologist there told me most everyone has some. He went on to say he might have too — he doesn't know — because he's had no reason to find out. He says unless it increases, we won't worry about it. Just thought I would share what little I know about slight cases of MAC. Perhaps he's wrong — but that's what I was told.

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Thank you!

I was just diagnosed but it is not severe so we are just doing the Aerobika for 6 months and then another scat scan. I’ve had-bronchiectasis for 10 years. I will try anything not to be on the medications. The internet is scaring me. I read about a form of vitamin D to try. What is it and what dosage?

@tinaesims

I was just diagnosed but it is not severe so we are just doing the Aerobika for 6 months and then another scat scan. I’ve had-bronchiectasis for 10 years. I will try anything not to be on the medications. The internet is scaring me. I read about a form of vitamin D to try. What is it and what dosage?

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Hi @tinaesims, I'd like to add my welcome to @auntnanny's. I moved your messages to this discussion so you could also meet @sueinoregon who was also diagnosed with MAC. It is a scary time, but you'll find much support and incredible information from the members of this group.

Here are a few discussions that I recommend reading (and joining in):
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
– NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

I encourage you to browse through all the discussions. See a list of all of them here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

Keep asking questions and then ask some more.

Posted by @onana

in reply to @tinaesims
Hi, I just began the three drug treatment on Monday. I can't say I'm not a bit frightened to go ahead with it, but the idea of killing this infection (MAC) and halting the damage to my lungs is very appealing, and this forum has given me the courage to go forward. Reading the support of others is the antidote to all the scary stuff on the internet. Stick with the forum and be your own advocate. About vitamin D…I take 2000 IU's daily of liquid form D-3 to boost my immune system. I don't know if it really helps but I'm willing to try. Good luck with your 6 month treatment!
Olivia in California

@irene5

@sueinoregon First let me say “welcome to this site.” Like you I was in an emotional place about this diagnosis, especially since I, like you, have other things going on as well. This site will give you so much good informative and support. I have been so grateful for that and for the friendships I have made through this empathetic and knowledgeable forum. Because of that I am in a stronger psychological place than I was before finding this site. Each of us have our own personal journey with MAC. Attitude is everything Sue. We are all here for you, and if you go back and read previous posts you will find lots of answers. Our previous and present mentor and many members have been extremely helpful in providing good and helpful information and support about this disease. Welcome! (Irene5 from Connecticut)

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Thank you Irene5. I will continue to read the posts. I deal with it OK sometimes, but …..it's like when you're sick you're not feeling well. I will look for more info about other treatments than the antibiotics. It is hard to reason that anything else could fully take the place of the antibiotics. On the other hand, if they help me fight this, I reason, perhaps I will feel better in the long run. Now I need to find out where the closest Mayo clinic is and if they accept Medicare assignment. I also made sure I got the best Medigap plan.
Another challenge is getting no empathy (not sympathy) from my husband. He doesn't say much about it except mention "I bet those antibiotics are going to be expensive" & complain I'm not "affectionate" just lately. Hope I didn't say too much. BUT, how it affects him seems to be his only concern. Anyone else made to feel this way???. I only bring it up because this seems to be what is upsetting me the most.
My sister died 3 years ago and her name was Irene. How ironic. I still miss her a great deal.
Thanks, SueinOregon

@oldkarl

@sueinoregon Keep plugging Sue. I am also from Oregon, (Lincoln County) Sounds to me like you have enough diagnoses to push for a dX of some disorder that would trigger all these things, probably an autoimmune something or other. There are some things you can be pretty sure of. It is Systemic (whole body), Primary (not triggered by something else like radon, etc.), At your age, 61, you are just getting into the years when these diseases are typically catching up with you. Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. Now, I am not sure but I could easily guess some form of Amyloidosis Light Chain such as Crohn's, Lupus, AL, Gelsolin (mine). (https://bit.Ly/1w7j4j8 under "Amyloid". There are a couple thousand in this category. Mayo-Rochester (Dr. Martha Grogan) or Stanford can help you most. Martha Grogan has done some wonderful videos on diagnosis of Amyloidosis, and they are free. Watch several of them, and you will surely get some great leads. Your doc will need to start with the SERUM FreeLightChain(c)Bindings and have ARUP in Salt Lake City analyze it. They are probably the best in the West. If your reading is >1.5 milligrams protein per deciliter of serum, you are seriously on the right track. if less than .5 mG/dL, protein is not the issue.

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oldcarl, thank you for your reply. I've never heard of Amyloidosis. Interesting. It said 70% are men, but 30% is still a possibility. Everyone in my family has autoimmune diseases. I have 3 and we have a son with advanced primary progressive multiple schlerosis. Thanks for the info and I will look at your dx more closely.
It looks like all the Mayo hospitals are far away from me I'm at the south end of the Pacific coast of Oregon. Where do you go? Are they good? Are they specialists with the Mayo clinic? ….I have a lot to learn.

@sueinoregon

Thank you Irene5. I will continue to read the posts. I deal with it OK sometimes, but …..it's like when you're sick you're not feeling well. I will look for more info about other treatments than the antibiotics. It is hard to reason that anything else could fully take the place of the antibiotics. On the other hand, if they help me fight this, I reason, perhaps I will feel better in the long run. Now I need to find out where the closest Mayo clinic is and if they accept Medicare assignment. I also made sure I got the best Medigap plan.
Another challenge is getting no empathy (not sympathy) from my husband. He doesn't say much about it except mention "I bet those antibiotics are going to be expensive" & complain I'm not "affectionate" just lately. Hope I didn't say too much. BUT, how it affects him seems to be his only concern. Anyone else made to feel this way???. I only bring it up because this seems to be what is upsetting me the most.
My sister died 3 years ago and her name was Irene. How ironic. I still miss her a great deal.
Thanks, SueinOregon

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@sueinoregon I am so sorry about your sister. Irene is an old name that means Peace (maker). I’d smack that husband of yours upside the head! Not that that’s a very peaceful thing to do, but it might make him take notice! My husband has sarcoid and is quite sick himself so we lean on each other. It wasn’t always like that so I understand how you feel about his insensitivity to your illness. I will pray he figures it out soon. That’s the thing with MAC – we literally can’t perform activities of daily living which may be frustrating for a spouse, but is way more frustrating for us!! I haven’t paid for the meds with Medicare and secondary insurance (retired teachers). Hopefully they won’t cost much for you. Big hug and know I keep you close in thought and prayer. (irene5)

@sueinoregon Hi, Sue. Yes, the Mayo hospitals are a long way from Oregon. Even it you choose to go to Mayo, you still have to make hard choices about which one to work with. I chose Arizona, which was a big mistake. They seemed angry because I had bought an expensive book on Amyloidosis edited by Morie Gertz at Minnesota. They never bothered to seriously look at even the lab results they took, or perhaps they did not know what they meant. Minnesota is the Mayo Amy Queen shop, I guess, but it is nearly impossible to get in. As far as locals, I have to go to the Clinics in the area, and I would not recommend them for Gelsolin. I am down to looking at a few directions. One more try and Mayo-MN. Stanford (they have a good looking clinical trial) MD Anderson (Houston or Arizona) or just wait to die. The ARCI.org clinical research app for Android says that I have less than two years to live. No doctor wants to look at my Gelsolin because it is such a slow grower. It seems to be right on the line between hereditary-Chronic and hereditary-progressive. Anyway, my contact at Stanford has been extremely helpful, especially if I can get into the CT. In my family, in three generations, so far, 11 of us apparently have Gelsolin or something similar. Thank God for the favor of letting us get as old as Methuselah's grandfather before the big pains hit. The diagnosis rate is low because it does not show up until the 70-80s or so, when most of us are gone anyway.

Liked by tdrell

@sueinoregon

Thank you Irene5. I will continue to read the posts. I deal with it OK sometimes, but …..it's like when you're sick you're not feeling well. I will look for more info about other treatments than the antibiotics. It is hard to reason that anything else could fully take the place of the antibiotics. On the other hand, if they help me fight this, I reason, perhaps I will feel better in the long run. Now I need to find out where the closest Mayo clinic is and if they accept Medicare assignment. I also made sure I got the best Medigap plan.
Another challenge is getting no empathy (not sympathy) from my husband. He doesn't say much about it except mention "I bet those antibiotics are going to be expensive" & complain I'm not "affectionate" just lately. Hope I didn't say too much. BUT, how it affects him seems to be his only concern. Anyone else made to feel this way???. I only bring it up because this seems to be what is upsetting me the most.
My sister died 3 years ago and her name was Irene. How ironic. I still miss her a great deal.
Thanks, SueinOregon

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@sueinoregon, I am so sorry about your sister, I lost my sister 3 years ago also and I know how that hurt. Sometimes family don’t understand this disease and they often think we’re just always sick. I have 5 kids and at first they won’t even try to understand what I was going through. I would feel so hurt because I wanted them to know it was so difficult for me. But they would often get upset and say mom why are you always sick and that hurt so bad. But it took about 3 years for them to understand it’s not me it’s the disease, and they know now I am going through a lot and they now support me all the way. They wanted me to just go out and enjoy life and I was always tired. But it took a long time but they do now. As for my husband he is one of the most wonderful man and he’s with me in everything I go through. Every doctor’s appointment and really supports me. It will get easier as you go. I wish you were close to Florida Jacksonville Mayo Clinic, it’s the best experience I had with doctors since I got Mac and all the other bacterial infections I’m fighting. The doctors are really great. But I’m sure there’s a Mayo that’s closer to you. I wish you all the best and hope that you will find the best doctor to work with you. Rita

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